Since my health started going upside-down about a year and a half ago, spoon theory has spoken to me in a way I didn’t really understand before. I had heard it, but it’s not something that can really be understood without experiencing that bone-aching fatigue that comes with being completely out of spoons. Since a body that isn’t functional still has to survive, I’m going to share some of my rules for when I have nothing to run on.
1. You know those days will come, so stock up for them. On the days when I have enough spoons to be a little productive, I’ll cook a big dinner, and make enough extra to freeze a few individual portions for later. That way if I can’t manage meal prep, there’s something there to be heated up and eaten. I also keep protein bars and yogurt on hand for when the microwave feels like too much work. Self care doesn’t always mean a bubble bath and a glass of wine; sometimes it means eating a cup of yogurt so you can take your meds and go to bed.
2. Be kind to your body. It’s going through a lot. One of the things that’s most comforting for me when I’m having a really bad pain or fatigue day is this soft, stretchy maxi dress I put on. It’s lightweight enough that I don’t feel weighed down by it, and it’s soft against my skin. It’s also stretchy enough that it doesn’t bunch up when I lie down. It’s not something I’d want to wear on public, because the print is loud and obnoxious and lime green. But it’s so comfortable that I can sleep in it, and I normally can’t sleep in clothes at all.
3. You don’t have to fake it. On bad days, you’re not going to be able to do what you do on good days. It’s just not going to happen. If you can’t do face wash and toner, use a micellar wipe. If you can’t bend down to tie your shoes, wear slip-ons. If you can’t walk around the grocery store, use a motorized cart. It’s okay not to be 100% all the time.
4. Take notes. You’re going to need records to show your doctor to reflect how you’re managing. It doesn’t have to be detailed, just a notebook with the dates and basic comments about how you’re feeling. If you’re documenting it as it happens, then it’s harder for a doctor to dismiss what you’re experiencing.
5. It’s OK to say no. The people who care about you will understand that there are limits to what you can and can’t manage. Be honest with them about what you’re experiencing and give them the chance to understand. I learned this one the hard way–trying to keep the love of my life from worrying about me, I ended up shutting him out, breaking his heart, and losing the best thing in my life. Trying to pretend nothing is wrong with your body is just going to hurt you and everyone around you, so don’t.
6. It’s OK to accept love even when you feel too broken to deserve it. In our society, we’re told that love is for the people who are whole, both physically and mentally. That’s bullshit. The people around us don’t see us as something weak and damaged. They see us as complex, messy human beings who are worthy of being cared about. It’s hard for me to imagine, when I’m at my worst, that someone sees me as worthy. I just have to trust that they do, that my loved ones aren’t going to lie to me, and that there’s something I don’t see.
It’s hard to give yourself a break when you’re bombarded from all sides with the message that you don’t deserve it. But when you’re dealing with chronic illness, it’s an important skill to learn, and one that I’m doing my best to manage. I doubt I will ever be back to where I was before my health derailed, but I’m doing my best to work with what I’ve got. Learning to cut ourselves some slack is a challenge, but we’re worth it. I promise.